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Survey Items: C4Q03_A, C4Q03_B, C4Q03_C, C4Q03_D, C4Q03_E, C4Q03_F, C4Q04
Denominator: CSHCN age 0-17 years
Numerator: CSHCN whose families report no difficulties or frustration accessing services needed for their child in the past 12 months; CSHCN who did not achieve this outcome
Revisions and Changes: These items were substantially revised in 2009. This measure is now comprised of six difficulties with accessing care: 1) not eligible for services; 2) services not available in your area; 3) waiting lists or other problems getting appointments; 4) issues related to cost; 5) trouble getting the information you needed; 6) any other difficulties not mentioned AND an assessment of how often parents were frustrated in their efforts to get services. Those CSHCN in the numerator answered YES to one of the six difficulties and usually or always to the frustration item. This measure is not comparable to outcome #5 from the 2005/06 NS-CSHCN survey.
Additional Notes: When answering, respondents are asked to "think about child's health needs and all the services he/she needs" -- including early intervention programs, childcare facilities, vocational education and rehabilitation programs, and other community programs." In order to meet outcome #5, responses of no are required on items C4Q03_A through C4Q03_F. If any difficulty was encountered on any of the items (answers of yes), then the child did not meet outcome 5. In addition, responses of never or sometimes feeling frustrated in efforts to get services are required on item C4Q04 in order to meet outcome #5. If parents report usually or always feeling frustrated in efforts to receive services, then outcome #5 is not met.
Treatment of Unknown Values: Unknown values (responses coded as 'refused', 'don't know', or system missing) are not included in the denominator when calculating prevalence estimates and weighted population counts displayed in the data query results table. In nearly every case, the proportion of unknown values is less than 1% and the exclusion of these values does not change the prevalence estimates (%) and only marginally affects the weighted population counts (Weighted Est.). Exceptions are noted in the form of a Data Alert at the bottom of a results table.
History and Development: The Maternal and Child Health Bureau leads the development of the NS-CSHCN survey, indicators and performance measures, in collaboration with the National Center for Health Statistics (NCHS) and a national technical expert panel. The expert panel includes representatives from other federal agencies, state Title V leaders, family organizations, and child health researchers. Previously validated questions and scales are used when available. Respondents’ cognitive understanding of the survey questions is assessed during the pretest phase and revisions made as required. All final data components are verified by NCHS and DRC/CAHMI staff prior to public release.
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C.I. = 95% Confidence Interval. Percentages and population estimates (Pop.Est.) are weighted to represent child population in US.
DATA ALERT: The CSHCN survey asks about 14 specific functional difficulties which CSHCN may experience. This list is not exhaustive of all potential difficulties. See an overview of Outcome #5 and its relationship to healthy development for CSHCN over the Life Course.
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With funding and direction from the Maternal and Child Health Bureau, the National Survey of Children with Special Health Care Needs was conducted by the Centers for Disease Control and Prevention’s National Center for Health Statistics. CAHMI is responsible for the analyses, interpretations, presentations and conclusions included on this site.
Suggested citation format: National Survey of Children with Special Health Care Needs. NS-CSHCN 2009/10. Data query from the Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health website. Retrieved [mm/dd/yy] from [www.childhealthdata.org].